MY DARLING BILL IS DEAD

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i.

He died at the University Medical Center of Princeton on May 6, 2016.

ii.

It was sudden, and not sudden. Although this blog has candidly addressed my thoughts and feelings as I enter late life, there have been significant and purposeful omissions. The biggest is that from its inception two and a half years ago, Bill and I both knew he had a fatal disease for which there was no hope of cure.

For a long time it was a theoretical knowledge, obscuring our horizon but not imposing much practical restriction on daily life.  Back in 2005, when we had been together only four years and still lived in Massachusetts, he felt unwell and checked himself into the ER of Mass. General.  It turned out he had been overdosing with vitamin D, which is unwise (as he should have known, being an M.D. himself).  In the course of the complete workup that hospitals are wont to do when addressing a systemic complaint, a perceived crackle in the lungs led to a scan, which led to a hospital pulmonologist showing up at his bedside to announce bluntly that, by the way, he had idiopathic pulmonary fibrosis and the average life expectancy for that disease was three years.

“Idiopathic” meant, in his case, no known cause.  Fibrotic scarring of the delicate lung tissue can be generated by continued exposure to and/or inhalation of strong irritants, after which it continues even where there is no further exposure. Bill had never worked in an environment polluted with noxious substances, never smoked, never lived in a heavily trafficked inner city.  He was a psychiatrist who sat in a chair in a comfortable and well ventilated suburban office for most of his working life and listened to unhappy people talk about their problems. “Why him?” is another of life’s unanswerable questions.

Moreover, the diagnosis was inadvertent.  If he had not gone to the hospital because of the excess Vitamin D, the fibrosis would not have been discovered until one or both of the two symptoms of this hopeless disease manifested themselves: continued coughing and/or shortness of breath.  Bill was symptom-free in 2005 and remained so for eight more years. That said, it’s not a diagnosis one can forget. He took a copy of the scan with us when we moved to Princeton and began a rigorous program of what he hoped would be proactive “alternative” treatment for lung issues.

These I will not describe, other than to remark that for the rest of our time together half our freezer and refrigerator were given over to expensive, time-dated and time-consuming antioxidant substances to inhale or swallow, and that one of our two linen closets contained enough supplements to open a store, plus boxes of bottled remedies to ward off any incipient cold that might develop from a sneeze or a sore throat, because even a cold could turn into a bronchitis or a pneumonia that his compromised lungs might not be able to handle.

iii.

The threat of death by suffocation was not all Bill confronted by the time he was 83 or 84. But although several of his other medical conditions were extremely painful, they were not fatal, and all but one tended to be cyclical, so there were periods of relief.  He was brave, patient, not particularly complaining, and appreciative of everything he felt life still had to offer.  However, these other ailments distracted me, so that I didn’t note with precision when the coughing began.  Looking back without notes, I place it in the fall of 2013 — two and a half years ago, which was when I began to blog.  (I don’t think there was a connection, but I must say that although he was never a demanding man, when doing all the chores around the house and tending to him began to consume much of my time, the blog was a great help to me; it could be written at home but also connected me to the world outside.)

The coughing was awful, and incessant, and utterly exhausting.  It sounded like a large dog barking non-stop.  If I had gone out to market or the drugstore, I could hear it coming from the front bedroom or living-room when I pulled into the driveway.  One or two of the neighbors inquired.  Not wanting to explain about the fibrosis, he said he was having a bad bronchitis.  Perhaps he thought that was true.  Somewhere he had picked up the idea that if the coughing was productive, as his was (meaning it produced phlegm), it was not a fibrosis symptom.  If so, he had been misinformed.  Even if productive, that kind of coughing is a sign of fibrosis.  In any event, he found a medication, Gabapentin, which suppressed the cough (although not the cause) and another year went by.  He could still climb the stairs in the condo without getting out of breath, and if he seemed to tire on short walks more quickly than before, that could be attributed to age. The last time we strolled the paths in Marquand Park together, in May 2014 (a visit memorialized in this blog with many photos of the trees he loved), he needed to rest on a bench halfway along.

iv.

At the end of 2014, the stairs became more difficult for him and we began the search for a pulmonologist to work with.  We did not revisit a second time the full-of-himself head honcho at Columbia Presbyterian in New York who had replied to Bill’s initial question, “How long do I have?” with a shrug and the curt, “Pick a number.”

In Princeton, the kindly fellow who ran the pulmonary rehabilitation lab at the University Medical Center where Bill would die a year and a half later told him he was off the bell curve for death from pulmonary fibrosis because he was still alive nine and a half years after diagnosis. That was cheering but also wrong. As we were told by the third pulmonologist, who took over when the kindly fellow retired, the clock begins to run from manifestation of symptoms, which is usually when the disease is diagnosed, and not from the time of an inadvertent diagnosis made when there were not yet symptoms.

Oxygen entered our house.  Medicare paid for a large concentrator with a fifty-foot cannula attached. (Easy to trip over.)  It stood at the foot of the stairs, so the cannula would reach Bill’s side of the bed in the master bedroom.  He didn’t need it for a while. He did need the seven-pound portable rechargeable oxygen concentrator that could be carried, with effort, in a shoulder bag or a backpack whenever he left the house or did anything requiring exertion. It had to be recharged every two hours or so, which meant we couldn’t stay out very long.  By now, I was doing all the driving anyway.

There was also Esbriet, an obscenely costly prescription medication the FDA had just approved; in Europe it had been shown to delay the development of the fibrosis somewhat if taken at maximum dose.  Bill was never able to achieve the maximum dose.  Even a two-thirds dose closed his esophagus so he couldn’t swallow, made him round-the-clock nauseous, and removed all his appetite, so that he lost significant weight — for him, always trim-to-slender, not a good thing. The third pulmonologist thought his problems with it might be age-related; younger patients seemed to tolerate it better. He recommended stopping it entirely or else trying an alternative and equally costly new drug, Ofev, that similarly slowed fibrosis development but had a different, although equally undesirable, side effect: constant and urgent diarrhea. Bill rejected the alternative without trial.

v.

At the beginning of 2016, a fourth pulmonologist arrived at the University Medical Center. She seemed empathetic and had a father with emphysema and his own oxygen concentrator at the foot of the stairs.  That may not have been the best of reasons to switch, but Bill wanted to feel comfortable with his doctor, which was probably as important as anything at this point. She put him on oxygen 24/7, which meant he began using the fifty-foot cannula day and night. Essentially, he was trapped in the house. It also rubbed sores on the tops of his ears. We had to put moleskin rectangles there.

The pulmonologist at Mass. General who had said the average life expectancy was three years did not offer detailed statistics.  50% of pulmonary fibrosis patients live five years from onset of symptoms; the other 50% don’t.  Since the coughing had not begun till the fall of 2013, I calculated that with some luck we might have another two or two and a half years together. Bill, tethered to his tubular lifeline, wanted to believe me but I think now probably realized it was not likely to happen.  He read books about the meaning of life, listened to Baroque music, watched nature videos, and slept more. We also held hands much of the time, even as we fell asleep.  I felt he was drifting into some space in his mind where I couldn’t follow, seeking to make peace with death.  Someone commented on this blog that the few and sporadic pieces I managed to post in 2016  were very dark.  Of course they were: It was just too hard to be lighthearted, even in a virtual world that wasn’t our real one.

vi.

Bill turned 88 on January 27.  After he died, I found in the recent Google history of his iPad the question, “What percent of people live to 88?”  Was he trying to comfort himself?  April 13 was our fifteenth anniversary but it was raining, so we postponed celebration.  A few days later, he made the effort to shower, shave and dress nicely; we went out to dinner at a local Italian restaurant. (He loved pasta to the end.)  I let him out at the door with his portable oxygen, parked, and walked back to join him.  Although neither of us knew it, it would be our last outing together.

Near the end of April, I came down with the worst flu I had had in forty years (despite our both having had the recommended flu and pneumonia shots the prior fall).  For four days, I could hardly get up in the morning.   Of course, he caught it from me.  Just as I was beginning to recover, he sank fast. He fell out of bed the following afternoon, so weak I couldn’t help him off the floor.  I had to call a neighbor and her teenage son; the three of us managed to hoist him onto the mattress. That night it happened again, at one in the morning.  This time I called the police. They sent an ambulance and the EMTs, as well as a young police officer.  The head EMT wanted to take him to the hospital, but Bill refused and signed a paper to that effect.  However, the following day, his fourth pulmonologist insisted I bring him in.  He had to rest several times between the door and the car. When we reached the hospital, I brought a wheelchair out and helped him and his portable oxygen into it, parked, and came back for him.  I had never pushed him in a wheelchair before and was picturing in my mind that I might be doing that from now on.  I still thought there would be a “now on.”

vii.

He arrived on a Friday. He died the following Friday.  A nasal swab indicated that what we both had had was a viral flu, which in his case had turned into viral pneumonia with a probable overlay of bacterial pneumonia.  For three days, while he remained relatively upbeat, they pumped him full of steroids, antibiotics, anti-viral medication and much more oxygen than the home concentrator could generate, but were unable to reverse the infection in his lungs. They then suggested a bi-pap mask, which would prevent him from eating.  They also explained that they couldn’t leave him on it long,  and the next step would be intubation (breathing on a respirator) followed, if that didn’t work, by a tracheotomy.  Bill adamantly rejected the idea of tracheotomy; he refused to live connected to tubes and machines.

At first he decided against intubation as well, knowing that if it didn’t assist him in beginning to breathe on his own, he would never come off it, meaning when they removed the tubes, he would die.  But then on Tuesday, he changed his mind. One of the hospital pulmonologists was encouraging intubation because with the extra time it could provide, the medication might eliminate the infection and he would have another two or three months of life. Eventually, he agreed.  “Let’s give it a shot,” he said.

viii.

I spent Tuesday night at the hospital.  We both knew it might be our last night together, because intubation involves so much morphine that he would be unconscious from then on.  But we had time to tell each other most of what we wanted to say.  When I couldn’t quite understand him through the bi-pap mask, he wrote in a little notebook I still have in my bag. I did most of the crying. He said he wasn’t afraid to die anymore, that slipping away under morphine was not a bad way to go, and that he was only sorry he was leaving me.  He also said many other things I shall treasure all my life, but they are not to share.

By Friday morning, it was clear that intubation was an exercise in futility; it was not helping him breathe on his own. The doctors asked if I wanted to continue. I called Bill’s son in California, with whom I had been in daily contact. He agreed we should let him go. I had asked the attending that day how long Bill might live when removed from the respirator.  He said a few hours, or even a day. They removed the tubes at 2:35 in the afternoon.  He was pronounced dead at 2:52.  I sat by his side, and held his hand, and watched the blood drain from his face.  Although the hand remained warm for a while, his face turned yellow.  Whatever was lying in the bed wasn’t Bill any more.  Bill was gone.

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66 thoughts on “MY DARLING BILL IS DEAD

  1. Oh, Nina, I am so sorry. From everything I have read from you for the past couple of years, I believe that Bill was a sweet soul and an wonderful partner for you.
    Last year, my husband’s cousin – who shares a close bond with my husband – was diagnosed with Fibrosis. Your blog today helps me understand better what he is going through, so I thank you for that.

    Liked by 2 people

    • Thank you, Nancy. He was a sweet, kind, patient and supportive man who was interested in me and everything about me till the end. I suppose we were lucky in having met when we did, although I used to tease him that had we both been younger and still involved with careers, family, child-raising issues, we each would probably have looked elsewhere. Timing may be all. That and the realization as one ages that the years are fleeting and no one is perfect. But two months out, I do still miss him terribly and painfully, every day.

      Your husband’s cousin has all my empathy; pulmonary fibrosis is a horrible and frightening disease about which even the so-called experts seem to know very little. In addition, they don’t all seem to be on the same page as to what to tell you about what you’re going through. Perhaps your husband’s cousin is young enough to be able to tolerate Esbriet better than Bill could; at least that medication is said to prolong life somewhat by slowing the fibrotic process. I wish him, and the two of you, all the best.

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  2. Dear Nina….I had been wondering where you had gone. Now, I know. Thank you for sharing this deeply heartfelt piece with us. I am glad you were able to say goodbye and hold hands until the last moment.

    Liked by 1 person

    • Thank you, Janet. Writing it was the only way I could explain my three months of silence. However, it took me a long time to be able to open WordPress and begin, and I cried throughout the writing. (The post still makes me cry when I read it over.) As for saying goodbye (without actually saying it), yes we were able to do that — the Tuesday evening and Wednesday morning before the Friday on which he actually died. But in truth it was me holding his inert hand at the end, clinging to the last bit of him I could. They had put him in a morphine-induced coma two days before. Did he sense I was there as he gave up his life? I would like to think so, but who knows?

      Liked by 1 person

  3. I wondered too why your blog had gone quiet, but still kept it in my ‘favourites.’
    The problem with life is that it ends, and I felt so sad reading of so much beauty in this, your post. Perhaps they (sadness and beauty) are symbiotic. I shed a tear.
    All the best,
    Gerard

    Liked by 1 person

    • Dear Gerard,
      Thank you so much for your sensitivity. Yes, of course our appreciation of each other is related to the sad brevity of the time we have left. I’m still crying. All the best to you, too.

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    • Thank you, Martha. But I don’t know about catharsis. I’ve been trying to process the fact of it for two months now and I think I’m just beginning to feel the grim finality and full weight of his not being here any more. But writing is what some of do when we don’t know what else to do. Right? xox right back.

      Liked by 1 person

  4. I am grateful for your so carefully describing what lies ahead, the aging, the being ill, the knowledge of limited time. It’s a guidance to us who are likely to be on a similar path sometime in the next few or many years. I am sorry that you have lost your partner; glad that you had each other to love.

    Liked by 1 person

    • I think it’s somewhat different for everyone, Jan — except for the sense of time running out. But if reading the post was helpful to you, I’m glad. And yes, I’m also glad Bill and I found each other (at 69 1/2 and 73) while there was still some time. Thank you for your kind words….

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  5. I am so sorry for your loss, Nina. Thank you for sharing what has been a very sad 2016 for you. Bill was indeed very brave. I do hope that you’ll continue to write regularly again because what you have to say is always interesting and compelling. – Marty

    Liked by 1 person

    • Yes, Marty, he was brave — perhaps braver than I would be in similar circumstances. I will be engaged in major life changes over the next several months (selling the condo, finding a smaller place to live, probably in a retirement community, about which I have considerable ambivalence but it seems the wisest thing to do at this point). However, I do plan to write when I can. I suppose the blog will be, at least for a while, a significant element in my “new life.” So thank you for reading it with pleasure. 🙂 And thank you for your very kind comment at this difficult time.

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  6. Rita

    Hi friend: I am so glad you’re back….and how wonderful that you could write about the sad, sad experience that unfortunately all of us will probably go through. Your being able to write so sensitively and beautifully about it, means
    that some healing has begun. —

    Liked by 1 person

    • “Healing” is a word I don’t understand, Rita. Even a knife cut leaves a scar. This was as if half of me and my life had been ripped away. I don’t doubt that I will get on with the process of living — indeed, that began almost at once — but I also don’t doubt I will not be the same person afterwards. That said, yes I am able to write about it (even though I cried almost all the way through the writing and the rereading and the editing), because that’s what I do when I don’t know what else to do: I write. But I’m glad you appreciated the writing, and understand that all of us in the eighth and ninth decades of life are living very near a precipice; we just don’t know exactly how near.

      Liked by 1 person

  7. Nina, I am so sorry! Reading your account of Bill’s illness and his suffering was so very sad! Your love & compassion came through in the writing! A difficult time for both of you! Healing thoughts! 💛 Christine

    Liked by 1 person

  8. Dear Nina, the two of you have gone through a very difficult time, and it is a consolation to know that you parted in relatively good spirits, holding hands. I think that most of us who’ve had the good luck to live a long life, are well aware that of our approaching demise. And spend more time considering how it’ll work out than we should. It’s so hard to choose whether to extend life a little, and go into the hospital, or accept the inevitable when the signs leave little doubt. Thank you for sharing this experience with us. I don’t know what you’re feeling now. Having had such experiences, I know there are a lot of different feelings that we have to endure before we can really continue life. And sometimes it seems like we’ll never be able to continue… but that’s not usually true. My best wishes to you. I am sure that you have a number of reader/friends who hold you close to their hearts, as I do, in this time of loss.

    Liked by 1 person

    • Thank you, dear Shimon. I don’t know everything I’m feeling now, either. When I must, I function efficiently and well. At other times, I sob. It is frightening to be nearly 85 and all alone in a town to which we came just ten years ago, and where I have only acquaintances — no real friends. (By now, most of my real friends, who lived elsewhere, are also dead.) On the other hand, I have pulled myself up by my own bootstraps before, and suppose I can do it again. And then there’s the blog. Bill had great confidence that I would be all right when he was gone. He even predicted I would meet someone else. (Although what or who he was thinking of, I have no idea). Your last sentence is lovely.

      Liked by 1 person

  9. Oh Nina, I’m so sad for you. I too had noticed your absence from your blog and feared that illness in one way or another might lie behind your silence.

    My heart stopped as I read your post. That’s because my father died of the same disease (it used to be more commonly referred to as cryptogenic fibrosing alveolitis) at the age of just 60. I remember lying awake, listening to that unceasing cough in the next room, right at the start of it all, when I was still living at home. I understand only too well the way the disease progressed for Bill, and the experiences you so poignantly describe. I’m sad to realise that almost 30 years on, there is still no cure, no better understanding of cause, and no better treatment programme than existed in my father’s day.

    I wish you every strength in your sadness, and I hope the heartfelt warmest sentiments of all your friends in the blogosphere bring you comfort.

    Liked by 1 person

    • Thank you, Julie. I had no idea your father had suffered through this same unspeakably frightening disease, and I’m sorry if the post awakened terrible memories for you. No, there is no cure (although perhaps, for some, slight alleviation for a while through the new medications, with their own undesirable side effects, of course). I suppose one might add, as Gerard did above, there is no cure for death either. Yes, the sentiments of my blogosphere friends are indeed a comfort for this worst of sorrows — but also, at other times, for many of our other problems. Perhaps that’s why we’re all here.

      Liked by 1 person

      • Please don’t worry, Nina. Your writing was beautiful to read. I was just struck by the coincidence. Bill’s experience and my father’s had many similarities, as you can imagine. You will be much in my thoughts in coming days and weeks, Nina.

        Liked by 1 person

    • Thank you, Judy. As I’ve noted above, writing is what some of us do when we don’t know what else to do with what we’re feeling. But I do appreciate your words, and I’m glad that mine were able to reach you…

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  10. Judith

    Nearly everything I would write you, Nina, has been written–and so caringly–by other readers and friends. I’ll only say that I found myself thinking of you yesterday evening, again wondering about the reason for your absence from this blog. A few minutes later in checking my email I found this heart-wrenching story, answering my question and stirring human compassion. I’m sure it can’t heal the deep sorrow you still bear, but I am glad that you’ve got so many of us holding you, and Bill, in our hearts.

    Liked by 2 people

    • Thank you, Mary Lou. I suppose there will be reports written on what comes afterwards — as I invent it. Right now, I have absolutely no idea what lies ahead, although I do have some working plans, which may or may not come to fruition on schedule, and may or may not turn out to be mistakes. I suspect one’s life becomes “interesting” only in retrospect, as one talks or writes about it with the dull, messy and less admirable parts left out, but I do appreciate your interest in reading about mine. I will keep writing, as long as virtual friends like yourself keep reading. 🙂

      Liked by 1 person

  11. Nina, I am so sorry. I have been thinking about you recently. I feared that one of you was ill or worse. I miss your beautiful writing and engaging stories. You are a very interesting person. As others said, when you wrote about Bill, it was a beautiful love story that unfolded later in life. It was almost as if all the other episodes were necessary to appreciate each other. You have many difficult decisions to make and I wish you the best. I hope you can check in with us periodically. You know you will get the best affirmation from your blogger friends. Peace.

    Liked by 2 people

    • Thank you, Kate. You’re absolutely right that our past experiences prepared the way for Bill and me to appreciate what we could give to each other when we finally met — at the ages of nearly-70 and 73. And yes, there are difficult decisions ahead, but life, at least for me, has nearly always been difficult in one way or another, the distinction here being that as one ages one almost has to invent one’s way. (There are fewer and fewer guideposts.) There’s also no way I would abandon the blog; it’s a kind of lifeline at this point. Especial thanks to you, as well, for being such a good blogger friend.

      Liked by 2 people

  12. Dear Nina, what a brave record you have made of Bill’s illness and death. I can only imagine what the last few years have been like. I have spent time (years) with very sick people and understand how hard it is watching someone you love suffering. Please accept my sympathy from across the ocean and try to look after yourself now.

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    • Thank you for your warm understanding and good advice, Hilary. Yes, it has been hard, but I wouldn’t have given up the last few years for anything, and I think he treasured them too.
      Now comes a future without him. Who knows what that will bring?

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  13. Seth Malin

    Dear Nina,
    I am so sorry to hear of Bill’s passing.From the brief conversation I had with him(and you) outside the PSRC I took away the thought that he was a caring and most certainly intelligent person.I recall your comment that Bill was the only person you knew who could discuss a book without ever having read it.His college papers must have been quite interesting.

    Thinking of you…

    Liked by 1 person

    • Thank you so much for writing, Seth. (And for still checking in to this blog.) Yes, he was caring, and intelligent, and warm-hearted, and much much more. I shall not know his like ever again. I do appreciate your thoughts…

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  14. Jerry Weinstein

    Nina,
    I’m so sorry to hear this news. I feel lucky that I was able to meet Bill on several occasions when you and he were living in Cambridge. I thought he was a special guy then, and reading your blog makes me realize how very special he was, and what a very rare romance the two of you had. Jerry

    Liked by 1 person

    • Oh, Jerry — it’s so good to hear from you. I think the first time you met him was at my 70th birthday party, when we had been together only three months and were still giddy with the discovery of each other. He was indeed special for me, and I miss him more than I can say. Thank you, thank you for writing….

      Liked by 1 person

  15. Writing through tears, I want to thank you for writing this the way only you could. It is full of your honesty and such a tender, loving account of your time together, especially at the end. I know that there will come a time when I will have to do what you have done and are doing, and it’s a path that fills me with fear and sadness, but reading this has helped. I too have found blogging connects me with the outside world in a way nothing else can. Reading your blog is always one of those best connections. You are so much in my thoughts now.

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    • Thank you so much, Dapple Grey. Unfortunately, the fear and sadness you mention do continue, even after the “path” has ended. It’s more than two months now since Bill died, but I still miss him terribly, feel very much alone (despite the friendly telephone voices of my two grown sons), ache with a sorrow that will probably never entirely dissipate. I’m glad reading the post has helped you, though. The blogosphere may be a virtual world, but it does provide human connections when one is in need.

      Liked by 2 people

    • Thank you, John. It’s over six months now, and a lot has happened to me since then, the major points of which I shall probably blog about. So I guess I’m coming along towards normalcy of a sort. I do appreciate your good wishes.

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